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12 Years Out of Treatment - Trouble Swallowing #195140
09-22-2017 09:44 AM
09-22-2017 09:44 AM
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Michaelii Offline OP
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It's never been the same - since surgery, chemo & radiation 12 years ago, I've never really been able to swallow quite the same.

I've just "learned" to live with it as a lingering side-effect, and frankly am so grateful to be alive, hated to even bring it up to anyone.

As I approach the 12 year anniversary in a couple days, I have noticed over the last several months an increasing difficulty swallowing, especially when I eat.

I feel like I've been blessed with near normal (or better?) saliva function post treatment - many of my friends who had treatment aren't as fortunate.

Anyway, it's been getting progressively worse to the point that at least twice in the last 4 months I've nearly choked to death - being unable to swallow or breathe.

Both times, I've managed to save myself after what seems like minutes (likely several seconds) of being unable to breathe. Each time, my partner nearby was getting ready to help.

Any advice?





Last edited by Michaelii; 09-22-2017 09:45 AM.

Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 10+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #195141
09-22-2017 01:01 PM
09-22-2017 01:01 PM
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Hi, maybe request a swallowing test through your PCP or oncologist. It's important to know what the problem is and that you are not aspirating/choking. Have you had bouts of pneumonia recently? If so, do make a point of telling the doctor. Difficulty in swallowing often leads to pneumonia.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #195153
09-26-2017 03:53 AM
09-26-2017 03:53 AM
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WZ Offline
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I am 15 years out of treatment. Just like you, I started to have swallowing problem about 3 years ago. Reported to my ENT doctor and had a couple of swallowing tests, got warning not to eat by mouth any more. Well,I have not done that yet, every time I met my ENT doctor he would ask me if I have pneumonia yet....Actually, my condition is worse than yours, I can no longer get solid food down my throat, it will start terrible coughing if I force....so, I put everything in blender and carefully let it flow down by gravity....and most of time I drink Fiber Source HN as lunch and make my own liquid dinner after work....so far it works but I have to be very very careful.


WZ | Stage 4, Tonsillar Cancer Aug, 2002
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #195155
09-27-2017 08:59 AM
09-27-2017 08:59 AM
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Don't wait for another choking event. Make an appointment with your ENT and have them follow up with a swallow test......Only after that will they and you understand what is happening during your swallowing process.

There are worse things than being on a pump for nutrition intake. (Three plus years for me personally.) Food is hard to give up. That's just a fact you may have to deal with in exchange for long term health.

Good Luck


1997 SCC Tumor on tongue - Partial Glossectomy
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Glossectomy
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-glossectomy
Free Flap reconstruction from thigh
PEG Tube inserted
6 weeks radiation
Trisimus
Pump Feed
Permanent Issues with speech and swallowing

Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #195169
10-01-2017 04:41 AM
10-01-2017 04:41 AM
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North Carolina
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Please get a swallow study done. I have also used a feeding tube for all my nutrition for over two years. Yes, I do miss the enjoyment of eating but not the fear of choking to death as I was doing. It is a very easy quick test that reveals much about the complex process that goes into swallowing. By not taking in enough liquids or nutrition you are harming your body and will begin to have serious health issues. It is not a pretty site. I speak as one who has "been there."


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197012
08-23-2018 09:03 PM
08-23-2018 09:03 PM
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Michaelii Offline OP
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UPDATE: I had the swallow study done, and the report stated that I indeed have swallowing problems, likely related to the radiation from 2005.

I attended some ENT prescribed swallowing physical therapy, which, although I didn't attend enough courses or act diligently enough in practicing and follow-through, didn't seem to really help much.

About a month ago I was at a back yard dinner party with family and friends and was talking, and enjoying a nice meal together when I tried to swallow and couldn't get a piece of chicken to go down and I couldn't breathe.

After a few seconds I panicked and started to get up and left the table to try to spit up the food and try to get some air.

I was able to get some very very minimal airflow around the stuck piece, it was shaped in a trapezoid and some slight air was able to go around the angled edges apparently.

But, my partner reported my lips we're turning blue and I was crying in distress.

He tried the "heimlich" type maneuver but it didn't "seem" to help. The host was calling 911 and I was feverishly trying to get the stuck piece out when with the very last ounce of air I had. I was abel to eject it out and across the back yard.

I was shaking and realized I was moments away from passing out and then asphyxiation.

Since then I've been much more careful, very very deliberate about my chewing, swallowing and food choices. I don't talk while eating and force myself to take very small (almost ridiculous) small bites of food, chew it like crazy and drink lots of water.

That event was the worst ever, I've had a few similar over the years and they seem to be getting more frequent - but this last one felt like I almost died.

There was no way an ambulance, EMTs or medical aid could have responded in time and the nearest hospital was several minutes away under the best circumstances.

So, I am now concerned about how much worse my condition will become. When will I need to get a tube again? (Had one during radiation, not fun, but it was ok, obviously LOVE food (I'm over 300 lbs now) (lost 120 during treatment).

Does any one ever get better? I'm otherwise healthy and very active (work 100 hours a week), sometimes very physical, but do need to eat better, and diet.

When this get's terrible can you still swallow smoothies, etc?

Is there anything I can do? Is a G-Tube the only option?

Radiation is the gift that keeps on giving.... Mayve didn't even need radiation it turns out.

I just don't know what to do. (Also, have carotid arteries that are not allowing blood to my brain, but that's another post).

All ideas are appreciated.






Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 10+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197038
08-27-2018 10:48 AM
08-27-2018 10:48 AM
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msweet2995 Offline
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Michael, I feel your pain, on a diced food diet and swallowing exercises since 2015, and very confused right now cause I passed the barium swallow study but failed an esophageal Motility Manometry Test which shows that my Throat, esophagus and sphincter to hold the food down is not working well and is very weak. So I am waiting for further advise from my local GI doctor and will be asking about a second opinion if I don't like what I hear. Keep the faith, our cancer is truly a hard road to bear.


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197040
08-27-2018 11:30 AM
08-27-2018 11:30 AM
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ChristineB Offline

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Unfortunately, Michael the swallowing and carotid issues are both well known problems for OC survivors after having rads. Im sorry to say these things normally continue to get worse as time goes on. Ive seen quite a few OC survivors who have been 10+ years out of treatments who have swallowing issues where they need to use a feeding tube and take nothing by mouth due to aspiration when swallowing which can cause aspiration pneumonia. Some long term survivors that continue having this happen end up spending time hospitalized for aspiration pneumonia. Make sure you follow up as directed with your doc. Its definitely not easy, many of us have this as well.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197047
08-28-2018 05:05 AM
08-28-2018 05:05 AM
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Posts: 227
NY state
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travelottie Offline
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I wish I had something positive to add...these long term side effects are very difficult. After regaining more salvia, taste, and stamina than expected, at 8 yrs post tx swallowing issues started. My husband passed swallow testing a year ago, but it is definetly becoming more problematic. His cough reflex remains adequate, preventing aspiration for now. Generalized fibrosis of the neck & jaw appears to a major problem.

i have been watching this deterioration knowing that permanent PEG will probably be necessary. I am somewhat prepared for this outcome, but it's been a long time to worry about what is to come.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197057
08-29-2018 01:09 PM
08-29-2018 01:09 PM
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USA
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Michaelii Offline OP
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Michaelii  Offline OP
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USA
So there is no treatment? (besides physical therapy with a 66%+ failure (PEG tube) rate?)

This is very disturbing and when coupled with the carotid damage makes me realize the "cure" to the cancer just gave me borrowed time.

I wish there was some hope for new treatment development, like stemcell etc.


Michael | 45 Male | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes Right Side | MRND & Radical Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 weeks Radiation/Chemo started August 15th at Sloan-Kettering, NY | Treatment Ended: 09-27-05 | Cancer free at 10+ YEARS | Lingering After-Effects of Tx: Thyroid function is zero, good salivary function, terrible tinnitus, some scars & neck/face asymmetry, gastric reflux. 2017 swallowing challenges & radiation damage to carotid arteries.
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197058
08-29-2018 01:41 PM
08-29-2018 01:41 PM
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ChristineB Offline

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Unfortunately that sort of info is kept confidential. In depth knowledge of medical advances would be something our members probably would never hear about. The only person I can think of who has access to those things would be OCF's founder Brian Hill. He sits on many boards along with some the countrys top researchers/doctors/Phd's and hears about new things that are up and coming. Those things must clear the FDA and have trials done so its years before things come out. Brian may hear the confidential things way before the general public does but with confidentiality clauses he probably isnt able to discuss the things he hears of.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197064
08-31-2018 01:28 PM
08-31-2018 01:28 PM
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Posts: 3,135
NYC
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PaulB Offline
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First, congratulations on 12 years! I’m not sure if we spoke in the past, but it’s good hearing from you! I’m sorry about your swallow issues. I’ve had plenty, and after my teeth were removed, more so, but I do eat fully by mouth after using a tube on and off for fives years, mostly when I was in treatment. Have you tried puréed foods or other easily swallowed foods? Chicken is a tough one! Most times I like to cook my own foods, but with special instructions, not to over cook certain foods, I can eat even pizza! Basically, it’s trial and error, and plenty of times i bit more than I can handle, and almost passed out before dislodging the food! That’s scary, and not fun, as you know!

On another note, have you or anyone in your family taken CPR, which usually include choking victims? I know, and hope to never use doing a belly flop from a kneeling position, head turned up and away, on the floor or dropping myself over the back of a chair to dislodge a stuck item in your throat. Most times, I can talk and breathe and the stuck food eventually dislodges. Anyway, it’s best to take a class. The belly flop I learned on line, so that may not be included in the class.

That brings me to another point. Later in September i’m having my throat dilated. I usually have it done twice a year, sometimes with a scope since I have Barrett’s esphogus which needs to be checked yearly.

On another note, I have one carotid artery, as a left section that was cancerous was removed a few years back, and just have the right side, which is clear. I get, up my request, the Doppler exam, which name escapes my mind right now

I hope this helps!


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: 12 Years Out of Treatment - Trouble Swallowing [Re: PaulB] #197066
08-31-2018 05:43 PM
08-31-2018 05:43 PM
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Posts: 287
alabama
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KristenS Online
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KristenS  Online
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alabama
Paul, do you have dentures, or have you managed without? Still working on this no-tooth thing. (Not to derail this thread, just wondering.)

And the notes on CPR training for friends and family, and self-care ... spot on. I teach even my littlest Scouts about some of those techniques, so they can know how to help folks larger than they are ... they may not remember it all, but at least they won't panic so quickly and have time to get help. Thanks for reminding us that it's not just for other folks! My refresher course (requirement for leadership) is due and that'll be a good incentive.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: KristenS] #197069
08-31-2018 08:46 PM
08-31-2018 08:46 PM
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PaulB Offline
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KristenS,

No, I don’t have dentures yet. When I was about to look into them or implants last year, as all my teeth were removed in 2015 due to all my radiation, over 200Gy, and recovering from a madiblectomy, I had a major heart attack right after that, and on blood thinners since. A few months later, I went to see my ENT for referal to the periodontist, but he told me relax for a while. It’s been a year now, and finally got my cardiologist clearance, so I’m going to look into something as he gave me the temporary ok for several procedures as long as I cut out the blood thinners 5 days prior.

It’s good to take a refresher course in CPR or be recertified, if one can.


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: 12 Years Out of Treatment - Trouble Swallowing [Re: WZ] #197162
09-15-2018 10:45 AM
09-15-2018 10:45 AM
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Posts: 2
hermosa beach, CA
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homestrong Offline
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hermosa beach, CA
Hi Everybody. I'm 20 years out and its both reassuring and somewhat glum that I've just now hooking in a community that both understands my suffering, as well as crossing milestones in the progression of Radiation Exposure Disease. I myself also was forced in a liquid only diet about 3 years ago. It changed my life, made it smaller. Michaelii, you did share an interesting paper on the Swallowing Degradation, but it only said "Novel Approaches are needed" .. Which is to say, they should relax clinical trail restrictions, for our sakes. We need help!


1999 rt Tonsil/Squamous Cancer, T1/N3/M0. Radical Neck Dissection, 5 1/2 weeks of Radiation. No Chemo.
2016 rt Carotid Occluded
2016 Liquid-Only Diet
2018 All Molars must be Extracted
?Fall 2018 Stent for lt Carotid
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197163
09-15-2018 11:15 AM
09-15-2018 11:15 AM
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Posts: 2
hermosa beach, CA
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homestrong Offline
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hermosa beach, CA
ChristineB et al First of all, I am really connecting with everything said here. I feel like I'm at home. And yes, I'm inspired, because, for starters, knowledge is power! Thanks everyone for sharing. ChristineB, I'm 20 years out from Rad, and I was forced in to my liquid diet, just 3 years ago, which seems late from the average here. But can I share with you all, a story of maximizing the parts of your body and mind that we're not radiated? Positive energy may just prolong all these inevitable Rad side effects.


ChristineB interesting observation about those possibly having new clinical data that could addressing our deteriorating throat functions. I'm quite motivated to pursue any avenues for treatment.


1999 rt Tonsil/Squamous Cancer, T1/N3/M0. Radical Neck Dissection, 5 1/2 weeks of Radiation. No Chemo.
2016 rt Carotid Occluded
2016 Liquid-Only Diet
2018 All Molars must be Extracted
?Fall 2018 Stent for lt Carotid
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197167
09-17-2018 11:11 AM
09-17-2018 11:11 AM
Joined: Jan 2003
Posts: 109
Kansas
W
WZ Offline
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WZ  Offline
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Kansas
Homestrong.

I started liquid food or noodle soup this year - also 16 years post treatment, I am wondering if you have any problem with your speech. To me, the radiation not only gradually weakened the throat muscle for swallowing but also the tongue muscle for speech, some words become hard to spell clearly.


Thanks


WZ | Stage 4, Tonsillar Cancer Aug, 2002
Re: 12 Years Out of Treatment - Trouble Swallowing [Re: Michaelii] #197169
09-17-2018 05:35 PM
09-17-2018 05:35 PM
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Massachusetts
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msweet2995 Offline
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Massachusetts
Hi I am 9 years post treatment and have been on a diced food diet since 2015 but not they are saying I can swallow but my Esophagus in no longer working, this is the craziest thing and with very dry mouth things are getting worse. But the GI doctor mentioned nothing about a feeding tube. So one day at a time. Wishing you all well.


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
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